It’s time to step up and stand out!
Date: 1st November 2023
And just like that we arrive in November and Down’s Syndrome Awareness Month is tucked away for another year. Did it pass you by or were you one of the many who joined the conversations on social media about all things Down’s syndrome?
Across the UK, and internationally, we saw many celebrations of potential and a crescendo of posts rightly asserting the value and contribution of our fellow citizens who just happen to have an extra chromosome.
Here in Scotland, we threw a spotlight on four big challenges which young people with Down’s syndrome tell us need to change if they are to have any hope of achieving their fullest potential.
I’m always struck how polite and reasonable people with Down’s syndrome are when talking about what needs to change in their lives. I prefer to talk about their four big challenges as ‘wicked problems’.
It’s wicked that people with Down’s syndrome continue to die prematurely (up to 28 years younger when compared to the general population) when most of those deaths are preventable and avoidable. It’s wicked that people with Down’s syndrome are not visible and included in our workforces (figures suggest it’s as low as 4.1% of people with learning disabilities are in paid meaningful employment). It’s wicked that people with Down’s syndrome stare into the abyss when leaving school and starting their adult life when for everyone else it’s a celebrated right of passage. And it’s wicked that people with Down’s syndrome are not more visible and valued in their local communities where hate crime and prejudice continue to sit just beneath the surface.
So what’s this got to do with me, I hear you say. My response? Everything.
Let me explain.
People with Down’s syndrome are not born vulnerable. Yes, they may have additional (and in some instances very significant) health needs but so do lots of babies born without an extra chromosome.
Like many people with a learning disability, our fellow citizens with Down’s syndrome become ‘vulnerable’ because of the behaviour and attitude of others towards them and the abject failure to have their human rights respected and protected.
I have recently provided a statement to the Scottish COVID-19 Inquiry – it follows a substantial submission that we made to the Inquiry earlier this year when we received a Rule 8 Order inviting a submission. In delivering my statement to two expert ‘listeners’ from the Inquiry, I was reminded of the prejudice and discrimination that rose so quickly to the surface during the pandemic. In truth, I wasn’t reminded – it sits with me every day.
It was wicked that the acute health needs of our community were only acknowledged and recognised months after the pandemic gripped us and people with Down’s syndrome (10 times more likely to be hospitalised and die if they caught the virus) were, late in the day, added to the Shielding Group. It was wicked that people with a learning disability were not prioritised for healthcare treatment because of the wholly inappropriate use of the Clinical Frailty Scale. And, it was wicked that ‘Do Not Resuscitate’ orders were even mentioned to some of our families just because their daughter or son happened to have Down’s syndrome.
I’m beginning to sound angry here. That’s because I am.
But here’s the thing – it doesn’t have to be this way.
Scotland has an unheralded opportunity to build forward differently and for the community in which I have the privilege to work, that means seizing the opportunity presented by the Scottish Government’s forthcoming Learning Disability, Autism and Neurodiversity Bill.
Before the year is out, we are expecting to see a far-reaching consultation paper on the proposed Bill. It will mark the start of a 3-4 month public consultation process in which everyone who cares about building a truly inclusive Scotland has the opportunity to have their say and leave their mark.
So, as we tuck away Down’s Syndrome Awareness Month, I for one will not let this rest.
I will continue to participate in the celebration and joy of all things Down’s syndrome, but I will, with equal fervour, call-out the prejudice and discrimination which results in such blatant health and life inequalities for people with Down’s syndrome living in Scotland today.
It’s time to step-up and stand out. Will you join me?
As my good friends Ross and Christian Laing often say: “why blend in when you were made to stand out!”
Eddie McConnell is Chief Executive of Down’s Syndrome Scotland a charity he joined in August 2019 after holding several senior leadership roles in Scotland’s Third Sector and Public Sector. He is also Chair of the Scottish Commission for People with Learning Disabilities and is father to a young man who just happens to have an extra chromosome.